Monday, October 19, 2009

Ehlers Danlos and Narolepsy

I scanned through my previous posts to see if I had talked about this, it's been on my mind a lot lately, but I don't think I quite got it into blogland!

To me it seems EDS and narcolepsy are a particularly brutal combination of disorders, both are relatively rare, so are often not well understood by those treating you. EDS is something you learn about in medical school, but then forget about, I have to spell it out to most doctors! At least everyone seems to have heard of narcolepsy, but they aren't always sure what it really means, as one doctor said to me, narcolepsy is pretty well known about, but still rare enough to only see one patient in a lifetime.

EDS is linked with chronic pain, in the grand scheme of things I seem to do quite well, I've had a bit of luck (or God given help, in my book) to randomly find good doctors and other therapists to help me manage it as well as some discernment to walk away from those who I think aren't going to help. So for me there are two types of pain, some without obvious cause, and some with.

For example, today my hands are hurting, that's both hands hurting evenly, yet today I've not knitted or typed much, but have been writing and drawing using my right hand, which has been injured in the past and it wouldn't surprise me if it hurt in a certain way, but in fact I just have generalised pain in both of them. That's the part of EDS pain that it's difficult for almost everyone, even EDSers to understand.

On the opposite end of the scale my hip is sore, that I don't find surprising at all, we know there is arthritis in there and I'm aware that the joint capsule has a tendancy to tighten up unevenly and cause pain. This is still part of EDS as I would almost certainly not have injured my hip the way I did if it weren't for having EDS (my hip injury occurred during the birth of my 2nd child, who would probably have got stuck and been delivered by c-section if it wasn't for EDS).

So as I'm coming home at the end of the day, today that was from the day program and picking up all the children, I'm in pain due to EDS and I'm hitting a tired spot because my narcolepsy medication is wearing off. If I wasn't in pain, I might have been able to beat the tiredness, if I wasn't tired, I might have been able to beat the pain. Thankfully today my husband was with me, so he brought the carseat and the sleeping baby it contained inside. Banana Girl had fallen asleep in the car, so he transferred her to bed, I'd have had to leave her in the car, thus requireing me to dash out every few minutes to check she's ok. Sausage Boy needed to do homework, I found the page and told him to get going and today my husband finished off with him, allowing me to have the cup of tea and a sit down that my body really needed.

We are also blessed today that members of our church are bringing us meals, so we have something warming on the stove whilst I feed the baby and write this blog post, but an ordinary day would include dinner prep too.

This latter end of the day is hard for all families, or so I'm told, add in my needs and it become really tricky, I have responsibility to the children, yet push at my physical boundaries to do the best for them at this end of the day is probably going to lead to burn out - and that's if I'm having a good day. It's hardly a surprise that I'm struggling with anxiety right now!

We desparately need to find some help for the end of the day, apparently as long as I find someone over 16, I can give them cash in hand and it's there responsibility to sort anything else out, though it would be good to corroborate that statement. In the UK anything involving children would be a lot trickier than that! I'm unsure how to go about finding someone and it's one task I'd really be happier handing over to someone else.

I've never met anyone with either EDS or narcolepsy, let alone both! With EDS, I have met the odd person who knows another person with it, but my real life experience of meeting anyone with narcolepsy is precisely zero.


sharalyns said...

Hey--I had a patient last week with EDS. I immediately thought of you.


BTW--paying cash like that for in home care is actually paying "under the table" to escape tax repercussions. A lot of people do it, but I wouldn't recommend it. You would do better with someone in the 14-15 age range and pay them cash for being a mother's helper. As long as they don't make over a certain amount every year, they don't owe taxes, but you also can't claim tax deduction for yourself for "childcare".

Places to look would be your church, rec center, preschool, school, and ask around if there are any girls (or boys) interested in making some additional cash.


Emily said...

Hello! I stumbled across your blog searching for info on pregnancy & EDS. I, too have type 3 as well as a bleeding disorder and recently found out I'm expecting. I was just wondering if you had any particular suggestions or advice, I know that may be a lot to ask so I really don't expect an answer :) But, I am considering a planned c section due to the bad hip problems I already have. Wanted to ask your opinion and see if you had any complications, etc. If you would rather, you can email me at emilyhan31 at gmail dot com. Thank you so much!

Anonymous said...

Hi, my family medical history is very similar to yours. My sister and I were both diagnosed with EDS. We both have fatigue problems but yet to discover that the problem will increase. The EDS comes from my mothers side. My mother has narcolepsy and EDS. My sister has insomnia and EDS and me, well I'm 16 and already experiencing fatigue and not you're normal teen fatigue. other family problems related to EDS like kidney problems, bladder, vision, basically almost every disorder or problem can happen with someone who has EDS. It's just a matter of over time it gets worse and worse. It's not something to be happy about to have. I don't want money I'm just commenting to let u know ur not alone and ur children mainly in females will most likely have it 50% chance. And it will get worse and worse with aging.

uSamantha Roby said...

Every do often I Google EDS and Narcolepsy to see if it is linked somehow or if I just picked the short straw in life, and today I going you blog. I too have Narcolepsy with severe Cataplexy and of coarse a mountain of EDS related issues like POTS, slow motility, migraines, constant dislocations. I don't drive anymore, and have had adverse reactions to every narcoleptic med. It's taking forever but in on my way to trying Xyrem.

Anyways, I haven't met anyone else with this combo either. 2 years ago I asked my doctor, why do I lose muscle strength in various parts of my body, almost always ending in me collapsing on the floor. The last really bad attack I lost my vision for 10 days, well it was extremely blurred, everything was either double or unable to see any detail. I could of had a mini stroke or seizure they said. It's not terrifying and debilitating than my EDS even though that's severe in itself too. I try really hard to get sleep, and always have to take a nap. But, thank God I have my awesome family. its so hard to find help, I just try to cope the best i can and take each moment carefully.